Case study: Grandmother living with Alzheimer’s Disease backs Greater Manchester campaign to beat dementia

A grandmother living with mild Alzheimer’s disease is proud to be taking part in clinical research to help future generations.

Carol Simcock, 71, lives in Handforth, Cheshire, with her husband Bryan, 78.

Up until her retirement, Carol, a mum-of-two and grandmother-of-two, worked as a secretary and latterly as a hairdresser. She first noticed signs her memory was failing in around 2007. An example of her lapses included going upstairs two and three times to do something, but then forgetting what she intended to do.

As can often be the case, due to the absence of a single diagnostic test for dementia-related conditions, it took some time before a definitive diagnosis could be applied to her.  Carol was diagnosed with MCI (Mild Cognitive Impairment) by her local Memory Assessment Service. 

[Read the transcript of the video about Carol's Join Dementia Research experience]. 

Around 18 months ago Carol and her daughter attended a memory event organised by the NIHR Clinical Research Network, Greater Manchester.

After meeting Professor Iracema Leroi, a CRN GM specialty lead for dementias and neurodegenerative conditions and taking part in a memory test, Carol wanted to know more about how to get involved with dementia clinical research.

Carol and Bryan were informed about Join Dementia Research (JDR) and they decided to sign up to the register as volunteers. This service keeps them up-to-date with local clinical research studies which are relevant to Carol and her condition.

Firstly, via JDR, Carol took part in an observational study called “Monitoring of Dementia using Eye Movements” (MODEM).  Carol really enjoyed taking part in the study so sought to take part in further clinical research happening in Greater Manchester.

Carol was interested in taking part in an innovative drug trial of a novel compound. As part of the process, to see if she met the criteria for the study, Carol underwent a free PET (Positron emission tomography) scan, which is used to produce detailed three-dimensional images of the inside of the body. The scan showed evidence of amyloid beta in Carol’s brain, which led to her diagnosis of Alzheimer’s disease in 2016.

These different types of clinical research studies are helping health professionals better understand neurodegenerative conditions and bring about improvements in their prevention, treatment and care.

This month, Carol has started the drug trial, which is assessing the effects of a new drug on patients with early Alzheimer’s Disease. She is visiting a nearby hospital once every four weeks for an intravenous infusion of the drug.

Carol enjoys taking part and is backing CRN GM’s campaign to get other people registered with Join Dementia Research.

“I was very keen to get involved,” said Carol, who is still active and is determined to live life to the fullest for as long as possible.

“I just felt that if I do this, it might help somebody else. I was thinking of my own children and grandchildren, but I was also thinking of other people.

“When anyone asks me ‘why do you do it’? I say, ‘why not?’ There is no risk to me whatsoever and it makes me feel good, because I know I’m contributing something in the fight against dementia and that I’m doing my bit for society. I would encourage anyone to do the same.”

Bryan, a former Navy electronic technician and technical author, has backed his wife’s decision to take part in research from the beginning.

He said: “If you don’t carry out clinical research, then treatments for dementia or any condition will never progress.

“Taking part has also offered us many benefits; the main one being that Carol has been diagnosed with Alzheimer’s. It was important for us to know that and has allowed us to confront her condition with a lot of positivity. We have joined the Alzheimer’s Society and done the annual Memory Walk in Heaton Park.

“We registered with Join Dementia Research online. It was so simple – just a few clicks – and the benefits are terrific. We’ve learned about all the opportunities for taking part in research in our area and by joining up you really are helping a great cause.”